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Mabel was born at 27wks and spent her first 3 mths of life in hospital. Things seemed ok once home then Mabel started to get sick with urine infections.
Which ended her in hospital many times it was the final time that scans etc started to be done. We got a call ton have an appointment at LGI Hospital with two amazing men. Mr Najmalding and Mr Finley little did we know what a massive part they were to play in Mabels life. It's amazing how you go in thinking that's it and your world is turned upside down.
She was diagnosed with Nephrocalcinosis and her kidneys were both packed with stones. She has had to date 22 surgeries and at 4yrs old that's so sad. The tube into her tummy gives her all her medication and her feed that runs through a pump over the day and night.
GOSH has also now playing a part in Mabels care and we were down there a few weeks ago.
Not only has it effected her kidneys she had surgery for her bowel she had a Nissen fundo to twist her stomach so she will never be sick again or burp. So we have to vent her feeding tube to release any wind.
She is fed through a peg into her tummy which without she wouldn't be here as Mabel too doesn't eat. The endless hospital stays surgeries appointments tests scans have made a massive impact on Mabel life and us as a family.
Without the team at LGI I know Mabel would not be here now. From the care while I was pregnant to the NICU to the surgeons SALT teams Dietitian consultants play therapist nurses theatre staff whow know Mabel so well. The list goes on.
To look at Mabel unless you saw her tube you would think she was like every other little 3yr old but her little body on the inside isn't.
Her strength and fight amazes us as a family and together we get though.
There is so much more I want to say but I will stop babbling now. I'm raising money for ward 42 LGI to give a little back as there part of our life.
So on 6th August iwill be running 10k . This maybe nothing to some but to me it's massive I haven't ran for 20yrs my fitness is 0. my health hasn't been great BUT I'm going to do this I'm going out everyday either running walking or biking and I'm feeling better for it.
Mabel never moans or complains she has awful days and awful nights she has tubes coming out some stays where you can't even cuddle her.
We also wouldn't get through some of the bad times without the wonderful love and support of friends who have been there through everything. We love you all and will forever be thankful for always being there . Mabel is very lucky to have so many people looking out for her and always sending her love.
Her brother and sisters are such a support the girls have been a rock learing how to use the feeding pump do her meds and know when her tube needs venting due to her not being able to be sick or burp anymore.
Were beyond grateful to LGI for everything they have done and continue to do. So from Mabel and tubie thankyou.
She has again overcome illness due to her kidneys passing a 12 mm kidney stone which caused serious infection and spending time on L10 Renal ward she is awaiting more surgery.
Mabel had an Xray today after 4 days of having markers put down her gastrostomy to see how effective her bowel is working. The xray showed that all four days worth of markers were still in her system at different stages which is not what the Consultant wanted to see. He also noticed that Mabel was again very constipated. He discussed bringing her into hospital for bowel management but due to her already numerous stays and future procedures he has decided at least at first to implement some medicine changes at home, however if these don't work then off to hospital it will be. He said that Mabel is almost of the right age to be able to start a procedure called wash outs which will evacuate her bowels manually. Although this is not a plesent thought if it brings mabel some relief then it will be worth it. She again today has been so brave and amazing.
Mabel is truly beautiful amazing funny and cheeky. She makes us laugh and smile everyday and her strength shines through her.
Mabel had her Renal appointment this morning and her wonderful consultant Dr Finley talked to us about the type of stones that Mabel was producing and the plan for attempting to slow down the growth and frequency that they appear. She has been prescribed a thiazide diuretic which should inhibit them however it's a long time until you can be sure that it's working (1 year +) we know this is life for Mabel but we also know she is receiving the best care. We will be starting the new medication tomorrow which Mabel will have twice a day so we can keep a close eye on her. I'd be lying if I wasn't worried a little.
Mabel will need regular blood pressure checks and urine samples as the medicine can have some pretty horrendous side affects ( low blood pressure, Gout). Mabels ace dietician Lisa Henry was there too and as always offered some great advice about Mabels fluid targets and outputs.
Unfortunately we also found out that the wonderful Mr Najmalding who has preformed all of Mabel's operations is retiring in the next 6 months, we are forever greatful to him and worry about who will do the operations in the future.
Yet again this little girl has been amazing xxxx
Sadly due to me being taken very poorly im not able to take part in the Leeds 10k on sunday im so very upset about this but i will be doing the York 10k on 6th August.